Children and adolescents with unilateral congenital below elbow
deficiency experienced negative and positive feelings depending on age and how
people reacted to the deficiency, according to a study published in PLoS ONE.
Forty-two children aged 8 years to 20 years, 16 parents and 19 health
professionals participated in online focus group interviews that concerned
remarks about psychosocial functioning. Opinions and experiences were gathered
on activities, participation, prosthetic use or non-use and rehabilitation
care.
Children, adolescent experiences
Depending on age, children and adolescents with unilateral congenital
below elbow deficiency (UCBED) experienced mixed feelings. Children aged 8
years to 12 years reported both positive and negative feelings about their arm.
Children reported negative feelings of shame, being different than peers and
being fed up with the deficiency. These feelings were attributed to the
negative reactions they received from people in their environment, such as
teasing, rejection, being treated differently than peers and fear or discomfort
about the shortened arm.
Children aged 13 years to 16 years were more likely to having negative
feelings related to UCBED. Feelings of shame and insecurity about being
different from peers arose mostly during puberty, but often went away.
In contrast, positive feelings, such as pride, acceptance, satisfaction,
being comfortable with being different than peers and not feeling different at
all, were reported more often by adolescents aged 17 years to 20 years.
Overall, researchers found that children and adolescents often reported
negative feelings when people stared. However, when family, friends and
classmates supported them, children and adolescents had positive feelings and
were able to cope with their deficiency. Coping was also easier when children
and adolescents had peer-to-peer contact with other individuals who had UCBED.
Among children and adolescents who did and did not wear prosthesis,
positive, negative and mixed feelings about their deficiency did not differ,
but study results showed a difference when it came to having a sound hand.
Prosthesis non-wearers expressed both the need to have and not have a sound
hand, while wearers indicated they would like two sound hands. Non-wearers were
more resilient and willing to explain UCBED to people in their environment than
prosthesis wearers, but they were also more likely to hide their short arm.
Children and adolescents admitted to wearing a prosthesis for cosmetic reasons,
as well as to prevent negative reactions from the environment.
Parent, health professional experiences
Psychosocial feelings of coping and acceptance were not only expressed
by children and adolescents, but their parents as well. After the birth of
their child, several parents experienced negative feelings, such as anger,
shame and guilt. Although some parents quickly accepted their child’s
deficiency, other parents believed that the deficiency was a handicap to the
child’s early years, making the situation harder to accept. However,
negative feelings disappeared once parents realized their child was developing
normally.
Peer-to-peer contact was also helpful to parents whose child was
learning to live with UCBED. As well, parents benefited when their child wore a
prosthesis. Parents also valued help from a rehabilitation team, which offered
understanding and recognition and reassured parents about their child’s
future.
According to the health professionals involved in the study, assistance
from rehabilitation should include psychosocial help and education for children
and parents. The rehabilitation center should also spread education by
collaborating with the child’s school, family or sports club. Most
importantly, parents’ coping strategy is a big help for children to learn
how to deal with their deficiency.
“From our results, we advise the rehabilitation team to make
parents more aware of the great influence they have on the psychosocial
functioning of their children,” the researchers concluded. “And
finally, we advise them to make adjustments to the psychosocial help given by
the rehabilitation team, since help in the form of conversations with
psychologists appeared not to be helpful, and to encourage peer-to-peer
contact.” — by Casey Murphy
References:
De Jong IGM. PLoS ONE. 2012;doi:10.1371/journal.pone.0037099.
Disclosure: The researchers had no relevant financial disclosures.
